Parenting Autism With Autism: Tips for parents on the autistic spectrum Part 2 - (Dealing With other People's Opinions)

This article is the second in a series about parenting a child with autistic spectrum disorder when you yourself are on the autistic spectrum. It was originally written for Aspire magazine, a magazine which was produced entirely by and for people on the spectrum which is now out of print. The subject of this article is how to deal with the opinions of others in relation to your parenting.

Fact: There will always be opinions. Individuals who are on the spectrum can be especially susceptible to other people's opinions because of the tendency to take things literally. Even though people with aspergers can often have a tendency to take the first account as blind truth, it is also true that the evolving and conscientious AS person might be a little more prone to suffocating from over advice due to the tendency to take things literally, this might be especially true in relation to parenting.

It's my belief that in order to be a successful parent of any child when you are AS spectrum means you will have to do research and take advice, this is because the ability or delay in ability to pick up social clues will also extend to the ability to interpret clues about parenting and to understand the clues given by the baby or child. The other thing which makes it even 'worse' is if you are parenting a child who is also AS or ASD because the cues that a spectrum baby give are absolutely random and so damn untypical that the NT's can't work them out.

Ironically, although your own autism might later make you an expert on how to deal with your own autistic child, the autistic baby on the other hand is a near on impossibility for most asd people and I believe that a spectrum parents will need some additional help with this and should seek for it where possible.

As for other people's opinions about parenting, they come in many guises, advice, books, glances and funny looks! Advice should be looked at like a visit to the museum, listen, take notes, enjoy the journey but remember that it's all based on past history. There are a few succinct lessons that can be extracted from each bit of advice (or indeed each visit to the museum) but you don't swallow any advice whole hog, this process is very hard for most aspies.

Practicalities

The practicalities of early parenting defeat most aspies for a number of reasons: first of all early parenting involves lots of noise, the ability to multi task and the ability to cope with change very, very quickly! Horrid for any AS person. Let me outline those points again:

Reasons why early childhood parenting is difficult for AS and ASD parents:

• Constant sensory over-stimuli
• Multi-tasking
• The ability to cope with change

If you were looking at this list as a description of a job at your local job-centre then most people on the autistic spectrum wouldn’t apply and yet this is only part of the person specification for being a parent. Parenting children over the age of 5 gets a little easier because they go to school so you can get 5 hours at least without the constant over-stimuli and then you can attempt to structure the rest of the day in a reasonable way!

Coping

Coping with babies is probably the hardest challenge in terms of parenting. Autistic spectrum parents might struggle greatly not only with the routines and unpredictability but also how to give the correct type of attention to the child. It might be even more difficult to know how to give the right sort of attention to a neurotypical child then an autistic child because you will have seen those responses more often and be able to mirror what you have picked up. Many people just don’t know what ‘to do’ with a young baby, some of the limitations relating to play and imagination that you experience by being on the autistic spectrum might also impede on that further.

Another aspect that might be hard to come to terms with is grief, even though you have at one time been diagnosed as being on the autistic spectrum, you will probably still need time to grieve if your own child also receives this diagnosis.

The idea of an Autistic spectrum parent coming to terms with having an autistic spectrum child always makes me think of the scene in Shrek where Shrek learns he is going to be a father and starts grieving the plight of his son turning out as an ogre and all the hardships he will have as an ogre, even though he is most obviously an ogre from the start! Parenting autism isn't any easier just because you are on the spectrum yourself, at its best you might find it mildly amusing to see you own difficulties reflected in your child, at it's worst - it could bring up some deeper emotional issues about your own perspective on autism and they way you were parented yourself.

On the subject of grief I would recommend every person who has a child or parental responsibility for a child on the autistic spectrum to read Jim Sinclair's paper Don't Mourn For Us (see below) *

Other People's View Of Your Child

The most annoying thing about parenting an autistic child is when other people attempt becoming hero’s. Unfortunately, the media likes to portray children with classic kanner's syndrome type autism and as a result everyone thinks they are a hero when your child (who is not actually mute) speaks or cuddles them. This is response is very sad in people and to deal with it I usually make up a short cartoon version of their behaviour in my head in order not to become annoyed by how condescending it seems and how annoyed that makes me feel.

I'm afraid there is something I have consistently noticed about Neurotypical response to autism in general -

autism can be a huge challenge to the ego of the neurotypical person. I would like to say that point again: Autism, although described by NT's as being a state in which the ego state is not fully formed...is often a huge challenge to the ego of the neurotypical person. Why am I saying this, and what relevance does it have? Well, as mentioned before, when it comes to the treatment of the autistic child the main ego problem here is that everyone wants to be a hero. Childhood autism is seen as a condition from which the child must be drawn out and the person attempting to draw out the chid gets some kind of personal reward in achieving this effect. This instinctual reaction to autism smacks of a lack of humility and subsequently often leads to the aforementioned embarrassing acts of 'heroism', however, there is nothing to be done about it, one simply has to abide it until it has run its course. The issue of heroism with often resolve itself as the hero begins to adjust their own perception of themselves, if they are successful they will learn a great deal, if they are not, they will eventually wear themselves out and go away. The main thing to remember is that these random displays of heroism have nothing to do with you or your child and they should be ignored until they resolve themselves. It can often be useful to be politely assertive if the interaction is becoming particularly distressing to yourself or your child.

Ironically, In later life the ego response that occurs in neurotypical people will reverse itself when the realisation comes that there is nothing to 'cure' and that there are therefore no heros to be made. One of the most challenging aspects of adult interaction with the adult asd person will be the lack of two way conversation, if you are on the autistic spectrum you will have recognised the difficulty this causes in sustaining relationships. Both heroism and apathy are responses that relate to the other persons the ego therefore, try not to take these responses on too personally.

What kind of parent will you be

In my first article I talked about how the only article I'd found on autistic/autistic parenting was quite negative and discussed how autistic spectrum parents were likely to cold and controlling. Actually, the truth is that pretty much all neurotypical parenting is based on control with the exception of those who have swallowed a book on Montessori, it's just that once again, there are socially accepted of control and what is not. It is socially acceptable use subtle emotional manipulation to encourage your child to seek a particular course and call it guidance or but not quite so normal to have a routine that related to the need to keep all things blue in the same cupboard for instance.

Often criticisms of autistic behaviour don't actually have any logical basis other then the fact that they just 'feel' odd. Therefore, as a spectrum parent you will have to make a lot of your own decisions up as to what in your world you choose to control. Notice the key words here are 'your world', where control becomes difficult is where we start to control the lives of our children beyond the point of what is necessary for survival and safety. Let me put this point across another way:

We are only entitled to control our own lives: therefore we need to be aware of the boundaries between controlling our own environments and that of another person. We are only in control of the aspects of our children's life which are directly involved in their health, survival and safety from death or danger.

What your neurotypical partner might consider to be the 'rights' of the children might greatly differ from family to family so there is need for caution. One issue that can be difficult to perceive is the area of emotional neglect. Many people with asd do manage to become extremely warm in their responses to others but others do not, in addition there are the unique expectations that come from our own culture. In a world of genuine emotional neglect there may be concerns if some of the external manifestations of autism seem to imitate neglect, however, there is one fundamental difference which is intent and that difference is felt by our children and often challenged by them in the most life-changing ways. Warm and nurturing relationships do exist between autistic spectrum parents and their offspring and it is very encouraging to see.

In summary

Competent autistic spectrum parents do exist and so do other people's opinions.

There are times when you will have to set your own resolve and create your own boundaries based on both your child's needs and your own needs

There are many different styles when it comes to parenting, what may seem a little strange to some may work perfectly for others, try to work out what is good for you and your child.

Make decisions based on a rounded out evaluation of information taken from different sources but make sure they are your decisions.

Try to create boundaries which do not encroach upon the needs, rights and feelings of your child or children.

*Don't Mourn For Us can be viewed at http://www.autistics.org/library/dontmourn.html